Thursday, June 4, 2015

TPGA has made a point of attending IMFAR, the annual International Meeting for Autism Research, since 2011. We believe it is important to go beyond learning about the current state of autism research by talking with and listening to researchers directly -- and not just about current research, but about how research can better benefit autistic people, in addition to those who love, live, and work with autistic people of all ages and abilities.

Here is what we learned and observed at IMFAR 2015, which took place last month in Salt Lake City, Utah. Note that the IMFAR conference itself -- with scores of presentations and hundreds of posters -- is overwhelming, and we only got to see part of what was actually presented and discussed in the full conference. We also live-tweeted several sessions from the conference, and compiled that coverage at Storify.

This is a long and link-rich post. Do not feel the need to absorb it all in one read.

Questions very welcome.

----

Who Should Autism Science Be Serving?

IMFAR 2015 brought hundreds of contemporary autism researchers together to discuss their work with each other, various members of autism and autistic communities, the press, and the world. Whereas in the past the conference has been more purely research-focused, IMFAR has evolved to better serve and include the communities its researchers study (though more work is needed, with regards to medical model language, etc.).

"Researchers now widely recognize that ASD is not a rare condition and that perhaps one percent of the population has autism. The popular conception of autism is of the child with the far-away gaze, and the vast majority of published research is on children with ASD. However, it's important to remember that most people with autism are adults.

"Concentration on early diagnosis and intervention for ASD has been important, but can leave the impression that later intervention is impossible or ineffective. In fact, little is known about ASD in older adults, and equivalently intensive interventions could also lead to major improvements in functioning and well-being late in life."

Hers was part of a cheering aspect of IMFAR 2015: a greater recognition of the autistic people who are here already, and the need for science and research to better serve them. Which is very much needed, as autistic writer Judy Endow notes:

"I love when science catches up to the autistic experience. It allows countless people to receive validation overnight. We go from “psychologically disturbed” and “behaviorally challenged” to “scientific” all because science has caught up with our everyday experience of the world around us."

The conference itself featured more autistic leadership than in the past, as well as more autistic buy-in, and more autistic people being consulted by scientists on matters that will help autistic people's quality of life today, not in the distant future. This is not to say we don't need long-term studies too; but we need to balance the proportionality of autism research, to skew more towards enabling the autistic people of all ages and abilities who are here already to live the best lives possible.

(The research community itself also has work to do regarding de-stigmatizing autism, as not all the autistic academics and researchers at the conference felt comfortable being "out" as autistic. That hesitance is for a good reason: many autistic professionals report that their competency is questioned, once they disclose an autism diagnosis. This needs to change.)

And, beyond research, the conference itself needs to consider how to better accommodate autistic attendees, because there are still far too many autistic people who want to attend but do not or cannot. In talking with autistic people who didn't attend but wanted to, the primary barriers are finances, processing, and sensory issues. With regards to finances, the costs of attending IMFAR (fees, lodgings, meals, travel) are not realistic for people who live on Disability assistance, as many autistic people do. And the difficulty of processing and responding to speech and visuals in real time can overwhelm many autistic people, as can sensory issues like lights, noise, and crowds. (And the fact that these
issues aren't studied enough doesn't really help.)

Here's what could improve participation: making remote access to sessions available (many autistic people participated remotely via social media options like Twitter), providing noise-cancelling headphones, using color-coded communication preference badges, providing sound-proofed booths with audio piped in (such as translators use). We really do need more autistic people at IMFAR, and to do that we need to remove participation barriers.

We also need more autistic people directly involved with the IMFAR conference itself, participating in committees and planning. But, again, finances may be an issue, which means that the $100 INSAR membership fee is a barrier.

Still, it was gratifying to witness the efforts of autism researchers who argued for putting autistic people's needs first. In her post on IMFAR takeaways, Sue Fletcher-Watson from the The University of Edinburgh​ made a case against normalizing autistic people, and for instead work towards the goal of being "optimally autistic":

"Pushing every child on to the same, neurotypical
pathway, ending up in the same neurotypical city, is boring at best, abusive at worst. Early intervention research needs to have a firm
foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child. If early autism
researchers can keep this in mind, we might be able to create something truly valuable – a way to help autistic children become optimally
autistic."

Four can be considered hallmarks of good,
stakeholder-endorsed research:

Connections. Between researchers, the community and practitioners, in both directions.

Researchers understanding what needs to be done ‘on the ground’.
Practitioners and communities understanding constraints on research.

Impact: Translation of research evidence into practice
recommendations. Policy based on the cost of doing something versus the
higher cost of doing nothing.

Outcomes. High quality measurement of meaningful progress.

In addition, three challenges to effective, engaged research were also identified. These are:

Scale: research tends to deal in ‘average’ behaviour in a group, but practitioners and community members need individualised supports

Funding: the perceived priorities of major research funders seem rarely to correspond with community priorities

Time: this resource is always in short supply and prevents
practitioners from drawing on research evidence, researchers from
sharing their findings, and community members from either taking part
in research, or sifting through the myriad options being offered by
commercial operators.

"If there is an overriding takeaway from IMFAR 2015, it has to be that
a dialogue in which scientists engage directly and respectfully with
those they seek to help can be incredibly productive. Scientists talking to each other doesn’t hurt, either."

Press Conference

Dr. Francesca Happe speaking at the IMFAR press conference.
[Image: A beige-skinned woman speaking at a raised podium
with a microphone, to the side of a long table with an
off-white skirt, at which several other people are seated.]

The IMFAR Press Conference (our coverage is on Storify) featured selected research from the conference itself, and had some good examples of how research could improve, as well as how it can help existing autistic people.

The opening IMFAR keynote was given by anthropologist Roy Richard Grinker, author of the
cultural/historical autism investigation Unstrange Minds and parent of
an autistic young adult. The talk was titled Who Owns Autism? Exceptionalism, Stigma, and Stakeholders, and challenged his listeners to consider that autism is a cultural construct, the stigmatizing and culturally transformative powers of language and labeling, and other provocative ideas.

Grinker: autism feeds an army of therapists and industry professionals whose very existence dependends on people being diagnosed #IMFAR2015

John Elder Robison
[Image: Man with short silver hair, beige skin,
and glasses, leaning on a podium]

Mr. Robison nudged the audience about its higher-than-typical exhibiting of autistic traits. He also passionately described the need to better identify autistic people and de-stigmatize autism -- so no one has to repeat his experience of becoming a star and then flaming out, both due to undiagnosed autism. He also wants scientists and researchers to really to listen to autistic people -- and clarified that that wasn't an accusation. He received a standing ovation from the packed room.

Baron-Cohen talked about the difference language can make when discussing and diagnosing autism, and also about recognizing the needs of autistic people -- but to support, rather than normalize them.

Minimally Verbal Individuals SIG

I attended the IMFAR 2015 SIG (Special Interest Group) on Minimally Verbal Individuals. Most of the discussion happened in small groups. I joined the Adult Outcomes group, led by David Beversdorf from the University of Missouri. Even in the short time available, and with top experts at the table, it was clear that autistic adults have no guarantee they will receive the types of supports they need and deserve, that there's no one plan or infrastructure to support minimally verbal autistic adults long-term, and most that most families are under informed and unprepared about their autistic members' futures. Additional takeaways plus live tweets on Storify, feedback welcome.

D. N. Top provided more
evidence that anxiety doesn't just frequently co-occur with autism but
is qualitatively different for autistic people -- as in, the structures of the brain itself react differently in autistic people than non-autistic people. This, obviously, needs more investigation.

Amygdala shows #Autistic people don’t always know when to be afraid—have a qualitatively different experience of anxiety. #IMFAR2015#autism

And J. Beck did some welcome mythbusting, in demonstrating that, contrary to
stereotypes, most autistic students in a sample did not have superior
math skills -- most had average or even below average math skills. Talking about this study brought validation, to many autistic people, parents, and teachers following our live tweets from the session.

Even accounting for other factors, #autism diagnoses account for an average 8 point decrease in math achievement. #IMFAR2015

I did not take a photo during the session,
so here is me and Sue from IMFAR2014.
[Image: two red-haired, beige-skinned
women smiling at the camera.
The one on the left is wearing glasses.
The one on the right dyes her hair. Shhh.]

Those who want to keep abreast of the state of ASD tech should make the most of Dr. Fletcher-Watson's DART (Development Autism Research Technology) project, at www.dart.ed.ac.uk.IMFARchat: IMFAR2015's Twitter Chat and Roundtable

"Adolescents with autism spectrum disorder often do not have access to
crucial peer social activities. This study examines how typically
developing adolescents evaluate decisions not to include a peer based on
disability status, and the justifications they apply to these
decisions."

"The language used to describe autism has undergone considerable changes
since autism was first described. Changes have come from the medical
and scientific communities, as diagnostic criteria and understanding of
the condition have evolved, and from parent and self-advocacy groups, as
the disability rights and neurodiversity movements have gained in
prominence. These changes have been brought about partly due to
important tensions in what people believe autism to be. Such changes
also have important consequences as the way in which people choose to
describe autism influences personal and societal perceptions of what the
condition entails."

"As children with autism become adults their primary medical care will
move from pediatrics to adult medicine. There is little evidence of
knowledge about autism among adult healthcare providers, and of their
readiness to provide optimal care for this adult population."

"[Health care]
providers admitted to being unprepared: 77 percent rated their ability
to care for someone with autism as poor or fair. What’s more, they
seemed unaware of how many adults with autism were in their care."

And
of course, these doctors could always look to the AASPIRE
www.autismandhealth.org toolkit for better assessing the healthcare
needs of autistic adults....

Musical Interludes

A few prominent conference speakers took over the pianos outside the main IMFAR conference halls -- mostly unnoticed by conference attendees. As I told one of the pianists, in this specific context it was like U2's recent adventures in getting away with incognito busking at a NYC subway station. It was also highly entertaining.

Final Thoughts

Things are getting better at IMFAR, in terms of how autistic people -- the reason INSAR and IMFAR exist -- are treated, included, and consulted in autism research. We still need more progress, though, in terms of determining best practices, supports, and services for autistic people in the here and now, moving away from objectifying medical model language, listening to autistic people about what they want and need instead of relying solely on family member and professional observations, and getting more autistic people to and involved with IMFAR/INSAR.

A final example of why IMFAR matters, why we need more of the unique synergies it makes possible when various members of the autism communities connect, happened after the ASDtech SIG. John Elder Robison joined a conversation I was having with a pediatric ophthalmologist about my comments during the SIG on the role simple tech can play in autistic qualify of life and learning. I was advocating for simple sensory screening with tinted glasses lenses, as per the advice autistic people themselves as well of UK author and practitioner Phoebe Caldwell, whom I heard speak on sensory issues last year at the National Autism Society Professionals conference:

The ophthalmologist looked skeptical, until Mr. Robison started talking not just about autistic sensory issues and interference, but, as a professional photographer, about the science of light, and why filtering out certain light wavelengths could actually make sense in the case of people who have trouble processing visual information. Mr. Robison seemingly handed the ophthalmologist an epiphany, one that might end up making a real world difference for that doctor's autistic clients. It was a lovely moment, and I was glad to be present when it happened.

I'd always heard that a
Mormon missionary's year of service is considered a success if they convert one person. By that yardstick, IMFAR 2015 was indeed a win.

Wednesday, April 1, 2015

Autism Acceptance Month starts today! Autism acceptance month is an autistic-led movement "about treating autistic
people with respect, listening to what we have to say about ourselves,
and making us welcome in the world." Here are some ways you can observe Autism Acceptance Month:

Autism Acceptance Campaigns and Projects

[image description: a pyramid of three rainbow asterisk stars, to the left of the words
"I signed the pledge! Acceptance is an action. Autism Acceptance Month.]

"April is Autism Acceptance Month. During Autism Acceptance Month, we
focus on sharing positive, respectful, and accurate information about
autism and autistic people.

"Autism Acceptance Month promotes acceptance and celebration of
autistic people as family members, friends, classmates, co-workers, and
community members making valuable contributions to our world. Autism is a
natural variation of the human experience, and we can all create a
world which values, includes, and celebrates all kinds of minds.

"You probably know an autistic person already. Get to know us a little bit better."

Other ASAN April actions

ASAN will be using #AcceptanceIs in April for various projects and conversations. Feel free to join the tag!

"AAD has been an ongoing event since 2011. ACCEPTANCE, not
"tolerance," not "I accept you but not your autism." Pro-neurodiversity,
pro-supports and services, against "cures," AAD was started to counter
April "awareness" stunts that demean us. It has expanded to become a way
of viewing Autism in a positive and accepting way. autismacceptanceday.blogspot.com"

Specifically: "...the lack of awareness regarding
education to Communities of Color related to Special Needs. Not only
were there not many communities speaking about Autism, most national
organizations did not discuss talking about Autism to Communities of
Color. The lack of "awareness" of people of color is apparent in
reviewing the lack of diversity in organization boards, campaigns and
outreach goals.

"Does that mean that we don't understand the importance of "Autism Acceptance?" Not at all.

"Because
there are few national campaigns such as this one, where the emphasis
is on #AutisticFamiliesofColor, the Mocha Autism Network decided to
start from the very beginning, to help our communities learn about
Autism and its traits, accept them in our community and gain the
resources to assist our communities wholistically. And we're getting
there. When this organization was conceived in late 2013, there weren't
very many talks of diversity in Autism Awareness."

"April is, of course, Autism Awareness Month. During a month
like this, in a literary community like the kidlit world, it’s logical
to discuss autistic representation in fiction. Autistic narrators have
been dubbed a trend, and however cringe-worthy that designation may
be–more on that later this month!–it’s true that there has been a minor
explosion in “autism books” over the past decade. Autistic narrators.
Autistic siblings. Autistic best friends. Sometimes those
characters’ autism plays a central role, sometimes not.

In all cases, it’s worth discussing. Representation, as we
all know, has a huge effect on readers. Good effects, bad effects.
Mirrors and windows."

"50% of this Enigma’s sales for the month of April will be donated to the Autistic Self Advocacy Network (ASAN),
an organization which the Autism community collectively would like you
to be aware of, and to support- instead of Autism Speaks (learn why!).

The
Autistic Self Advocacy Network seeks to advance the principles of the
disability rights movement with regard to autism. ASAN believes that the
goal of autism advocacy should be a world in which Autistic people
enjoy the same access, rights, and opportunities as all other citizens.
We work to empower Autistic people across the world to take control of
our own lives and the future of our common community, and seek to
organize the Autistic community to ensure our voices are heard in the
national conversation about us.

Autism Acceptance and Awareness Day App Sales!

[image description: a light brown
cartoon owl with its right wing raised,
under the words "Proloquo2Go
50% off on Autism Acceptance Day
~April 2]

From Proloquo2Go's parent company, Assistiveware:

"April is Autism Acceptance Month, and more specifically, April 2 is
Autism Acceptance Day! No, this is not a typo. We are shifting from
autism awareness to autism acceptance. We need a positive change!"

[Image description: a 12x6 grid of icons with small text labels above each]

"LAMP Words For Life™ is a full English vocabulary augmentative and
alternative communication (AAC) language app that combines the power of
the PRC Unity® language system with Language Acquisition through Motor
Planning (LAMP™) principles and strategies. LAMP™ is a therapeutic
approach based on neurological and motor learning principles as well as
clinical experiences that address the language development and
communication needs of children with autism. "

[image description: a stylized photo of a light-skinned child
with brown hair pinching the cheeks of a similar child,
surrounded by three cartoon characters, above the words
"When people are happy they smile.
Here is my happy face!"]